On a warm summer afternoon, I stood in front of tables at the local farmers market loaded with my favorite fruits and vegetables: peaches, tomatoes, corn, peppers, melons, kale. I practically drooled thinking about what I could make that week: corn and tomato salad, kale and mushroom quesadillas, chilled melon soup. The list was long. I love to eat seasonally and am a frequent shopper at our market. But this year has been different.
Since early winter, I have gone through several chemotherapies plus radiation to my spine for a painful flareup of my metastatic breast cancer. I have struggled with side effects from the chemotherapy and radiation, especially an inexplicable inability to eat with a poor appetite, food tasting funky, early satiation, and slow emptying of my stomach. While my mind was running through all the possible menus, my stomach was emphatically saying, “No.”
Sadly, it meant it. I have lost 14 pounds in the past few months, leaving me just skin and bones. No surprise, the weight loss has been accompanied by a new draining fatigue.
Mary Evelyn Burman, PhD, MS, BSN
Living With Metastatic Breast Cancer
I was diagnosed with metastatic breast cancer to my bones 3 years ago, after an initial diagnosis of cancer 7 years before that. Up until this flareup, I have managed the cancer and its treatment well with the help of family and friends, plus the support of professionals, including a counselor who I refer to as my “coping booster.” But this episode has thrown me for a loop.
My mood has been volatile, ranging from outright anger to confusion to fear. I have also found myself increasingly cautious. Can I eat this? What if this food makes it worse? I have ended up living mostly on Boost Plus, pudding, and scrambled eggs. However, at those times when I miraculously eat a decent meal and enjoy the taste of food, I am giddy.
Not being able to eat normally has been disruptive in ways I didn’t expect. Recently, my daughter and her boyfriend prepared dinner for my husband and me. I spent the meal pushing vegetable curry and rice around my plate, hoping that somehow some food would end up in my mouth and then ultimately in my stomach. I concentrated so intensely on trying to eat that I didn’t enjoy the usual banter and laughter. Ironically, even with friends and family around a table, eating has become a lonely time, rather than a loving shared experience, and I now dread family dinners.
Perhaps worst of all, I have felt vulnerable during this time. A lot. It is scary to be this underweight and to wonder if I have the reserves I need to combat something like COVID. Of course, during all this disruption and emotional upheaval, daily life goes on, with dirty clothes to be washed, an upcoming board meeting to get ready for, and a dog who is anxious for a walk around the park.
A Break From Chemotherapy
After struggling much of the spring and summer, and having several long conversations with my husband, I made the decision to stop all chemotherapy for at least several months. My oncologist had tried several short breaks, but I continued to struggle to eat. Each time, by the end of a few weeks off, just when I was starting to be able to eat, the restarting of chemotherapy would shut down my GI tract yet again. At my most recent appointment, I told the oncologist of my decision to stop chemotherapy for a longer period. The oncologist expressed her concerns about stopping treatment, most notably the possibility of cancer progression. But she also was supportive of my decision, knowing I was suffering.
It has now been a month without chemotherapy, but I am now eating more normally again, with a decent appetite, food tasting normal, and not feeling overly full after every meal. I am ecstatic! I feel human again. As I eat another big plate of food, my husband happily remarks: “I have my wife back.” I have even regained about a pound of weight. But then I realize that in another month, I will, if we stick with the plan the oncologist and I agreed upon, start a treatment recently approved for my type of cancer. It has some positive outcomes in relation to tumor growth and quantity but also some concerning side effects, especially severe diarrhea. I try not to think about this; instead, I focus on the present, happily eating my way through the end of the summer fresh fruits and vegetables accompanied by a substantial bowl of ice cream, a cookie or two, and several spoonfuls of half and half in my morning tea.
The Heavy Weight of Decision-Making
To deal with my angst about restarting treatment, I have focused on living in the moment, but I am only partially successful. Thoughts of what will happen when I restart treatment emerge, unwanted, way too often. I go back and forth between staying with the plan to start the new therapy in a few weeks to thinking I will quit treatment completely. I recognize the cancer will at some point progress beyond my bones to other internal organs, and the chemotherapy is supposed to stop or at least slow that down. I am overwhelmed and anxious about having to make this decision, which weighs heavily.
Questions loop through my mind. My cancer has been slow to progress since the start, thankfully. Is that because of the treatment, or because it is a less aggressive type of cancer? What if I make the wrong decision, and my life is shortened unnecessarily? Alternatively, what if I go back on treatment and am miserable? But what if this new treatment buys me some time (and I can tolerate it) and slows or stops the growth of the cancer while another treatment becomes available?
At times, I am realistic about my choices. After the past 8 months, I understand that finding a treatment to slow or stop the cancer yet doesn’t kill me before the cancer does is difficult. No clear guidelines exist for my breast cancer at this point. No matter what decision I make, I will never know whether it is the right one or not.
At other times, I am fatalistic. Hell… whatever is going to happen is going to happen, and it doesn’t matter what I choose. Then the logical left-brained thinker comes out, and I start to carefully weigh the benefits and risks of resuming treatment vs staying off treatment. In my rational mode, I believe that if I analyze this thoroughly, I will find the one option that will lead to better outcomes with fewer complications.
And still at yet other times, I decide to focus on my values and what is most important to me right now. My desire to focus on quality over quantity of life should help guide me, but it doesn’t; all options seem to lead to suffering in one way or another. Interestingly, quite a bit of the time, I am simply peeved. Why do I have to deal with metastatic cancer? Why do I have to make this kind of decision? I was just living the good life with every intention of continuing to do so to the benefit of my family and my community.
Let me be clear. I am not ready to give up on life, but I want my life to be one in which I enjoy my family and friends and contribute something meaningful to my community. Although I have metastatic cancer, I am not at the end of life, where a focus on hospice and comfort care is my preferred approach. Off treatment, I feel good. I can care for myself, enjoy daily walks, as well as read and write. I enjoy seeing family and friends and still serve on several community boards.
No Appealing Roads Ahead
Ultimately, I recognize there is no clear path forward, no right or wrong decision, no good, preferred, or desirable option. Unlike in Robert Frost’s poem “The Road Not Taken,” I am not sorry I cannot travel both roads; I do not want to travel any of my available roads. However, Mr. Frost goes on to write:
“Long I stood
And looked down one as far as I could
To where it bent in the undergrowth.”
As I look down my paths, I am overwhelmed by that heavy undergrowth: a darkness that is difficult to ignore. My options are all fraught; there are some benefits, but there are considerable risks regardless of what I choose. In a month, I must take one road or the another. But honestly, I don’t really know what I will do in a month. For now, I am headed to the kitchen for another bowl of ice cream. And perhaps a large slice of fresh melon. I will think about this decision at another time.
DISCLOSURE: Dr. Burman reported no conflicts of interest.
Dr. Burman is Professor Emeritus at the University of Wyoming in Laramie and served as Dean of the Fay W. Whitney School of Nursing for 11 years.
Disclaimer: This commentary represents the views of the author and may not necessarily reflect the views of ASCO or The ASCO Post.